Tom with Lincoln and Lando, Father’s Day, 2023 When I made the decision to sell our home in the Orlando area and move to South Carolina to be near family, I often told people I hoped to “give Tom his best life.” At the time, I had little idea what that meant.   So how do we give Tom his best life even while his brain continues to change? I’m still figuring it out. But here are some of the things that seem to help, despite many mistakes along the way.   — ROUTINE: I’ve mentioned before how Tom can easily become agitated if too much of his routine changes. He likes to go out and enjoys being with friends and family, but he likes being home even more. We haven’t done much traveling since his diagnosis, but I’ve learned that trips go much better if I can keep mealtime, bedtime, and time for playing games on his iPad as close as possible to what we do at home.   — FAMILY TIME: We spend most Friday nights with our oldest daughter and her family, who live nearby. Tom looks forward to this routine and especially to time with our two young grandsons. He also enjoys holidays, birthdays, and other family events. Earlier this spring, our youngest daughter blessed us with two week-long visits. And although our son hasn’t been here as much as he anticipated, every time he returns, Tom gives him a big hug and says how much he missed him. Relationships have always mattered to Tom, but while LWD, family seems to matter even more.  — SOCIAL/SPIRITUAL: Attending church and singing in the choir and senior choir are becoming more challenging for Tom, but he still enjoys both. We stay active at church because it’s long been our priority and also because it’s a safe and healthy place for Tom. Friends there have consistently shown their concern for both of us, helping me get him safely from one place to another and making sure he’s not left out or left behind. I have long believed that those with cognitive challenges can still have a strong connection to God, and this holds true for Tom today.  — DIET: I wrote here about some ways caregivers can stay healthy, and those choices have had an impact on Tom. I don’t experiment with new dishes too often; with his love for routine, familiar foods and longtime favorites make him happy. And although (with his doctor’s permission) I still ensure he has regular Wendy’s Frostys and other treats, I have  shifted his diet to include more fruits, vegetables, and whole grains. Living his best life means staying as healthy as possible while his...

(Hans Peter Gauster, Unsplash) Life is hard, and it might not get easier.”  Every one of our children knows this phrase well. While growing up, they often heard it from their dad (and eventually from each other as well as from me). It entered our lives as a line in an Amy Grant song, “We Believe in God.”  Tom is living this reality now. Life with dementia is increasingly hard, especially in this year that has seen a steeper decline in his cognition and abilities.  “What’s the hardest thing about living with dementia?” I asked him this morning.  He had just misplaced his coffee mug and needed my help to find it, so although he hesitated, he had an answer. “Well, two things. First, I can’t remember where stuff is.”  “Second …,” He gave one of his now-characteristic lengthy pauses, and after a couple of minutes had passed, I reminded him of the question.   “Well, second (another long pause) … I’m sorry, I don’t remember.”  “That’s OK, baby, I was just wondering what you thought. Is there something that really bothers you about having dementia?”  “(Long pause) “If I think of something later, I’ll let you know.”  I recently had to fill out a survey for an upcoming doctor’s appointment Tom has with the Brain Clinic at Emory University. It had to do with activities of daily living, a term health care professionals used to describe an individual’s daily self-care activities. I’ve filled out this survey before (Tom hasn’t been able to answer any medical questions on his own since 2018), but this time, I noticed that in more categories than ever before, I answered either “does not perform” or “cannot perform without help.”   The ADL questions referred to such activities as fixing meals, driving a car, and keeping track of medication. Tom can’t do any of those activities, and for most of the remaining ones on the list, he requires a lot of assistance.   What the questionnaire doesn’t reveal is how much assistance he needs. Although pet care wasn’t on the list, he needs more and more help in caring for his beloved box turtles. Last year, he could go out to our backyard pen and feed them on his own. This year, I go with him. He might forget that he’s not supposed to climb into the pen, which poses a fall risk. He might forget why he’s out there, and I remind him to give the turtles their food, which I’ve helped prepare. And of course without my reminders, he would forget that he needed to feed the turtles at all.  Other ways his life has become harder as his brain change becomes more marked include: ...

I knew it would happen. I just didn’t know it would be so soon.  I knew the day would come when our oldest grandson, who is now five and a half, would show more responsibility, be more careful, and have more understanding than my husband, who is living with dementia.   I knew the day would come when our grandson’s brain, which is constantly growing, would work better and faster than my husband’s, which is constantly shrinking. I knew the day would come when the two would—in terms of cognitive ability—meet in the middle, one continuing to advance, the other continuing to decline.  I knew it would happen. I just didn’t know it would hurt so much.  I didn’t come to this realization in an instant, of course. In reaching this conclusion, I am probably several months behind.  One of the places Tom and Lincoln both love is Chick-fil-A, Tom for the food and Lincoln for the play area (not to mention the ice cream). Over this school year, we have often picked Lincoln up on a Friday and taken him either to our house or this favorite spot for dinner and play time.  When we visit our local Chick-fil-A, we have to walk across the drive-thru lane to enter the restaurant. I used to hold our grandson’s hand when we did this to make sure he stayed safe.   But for the past several months, I’ve asked Lincoln to keep Grandpa safe. He walks beside Tom, holding his hand or his walker; looks both ways when we have to cross the drive-thru lane; and opens the door so Tom and I can go through first.  In the past, I loved our trips to Chick-fil-A because it was one of the few places where Tom would engage with Lincoln. He would stay in the play area with him, hiding from him as he came down the slide, then jumping out to “scare” him. Even while LWD, he did his best to make sure Lincoln stayed safe.  These days, I choose a table close to the play area because Tom rarely wants to go inside with Lincoln. I can monitor our busy boy from the table or, if I’m in the play area with him, keep an eye on Tom, who is usually sitting at the table, eating or staring into space.  We can still do the same activity; it’s just different now. We can still enjoy our time together; it’s just different now. Tom’s still himself; he’s just different now. As time has gone on and his brain change has continued, I’ve made some necessary adjustments. Some of these have been big ones: Managing all our money. Becoming the sole breadwinner....

by Andrew Pieper Tom with baby Andrew, 1991 “OK, love you too, bye,” I said—my standard farewell on my weekly video calls with my mom and dad. Yet the call had felt anything but standard to me. The outside observer probably wouldn’t have noticed, yet there were subtle signs that left me with a sinking feeling. We had talked about many standard topics and events: church, work, happenings around town, but today I had to refresh my dad’s memory on multiple subjects, things we had talked about only a few days ago. Dad “knew” everything we talked about in great detail, yet he had no idea about any of them.   This conversation lingered in my mind over the next week. I kept thinking of my dad, sitting there in his recliner, happy and content. Yet to me, who knew him as the witty, loud man who would often throw the childhood me up in the air to questionable heights of safety before gracefully catching me, he had become someone else entirely.   Over the next several days, after a lot of thinking and praying about what I should do, I decided the best thing would be to pack my bags, leave Texas, where I had been living for a few months, and go to be with my parents for a while. Being the only boy among four sisters, my dad and I have always had a special relationship, but it’s changing now—and will continue to do so. Neither of my parents was ever “handyman inclined,” so whenever I came for visits, I assisted them with such tasks as replacing lights, pressure washing, and landscaping. By living with them, I could help alleviate some of the day-to-day tasks from my mom, who currently is wearing multiple hats, working full time while taking care of my dad, the house, and the yard.    How long would this last? For the next six months? Six years? I have no clue on the timeline, but one thing that I strive to keep at the forefront of my thoughts is to have a heartbeat of obedience to God’s calling. I don’t want to have any preconceived “noes” in my mind for where God might call me or what He might call me to do. Just like that, I began the process of closing my storage unit and packing things up. Within two weeks I was ready to go; my van and trailer and I made the drive to South Carolina.   It is only my second week since relocating here, and already God has given me multiple signs that this is the right move for this season of my life. First, my mom got sick with...

(Terri Cnuddle from Pixabay) It seemed easy enough. Some friends from our time in Charleston were visiting our small town and wanted to stop by for a brief visit. Trying to keep things simple, they planned to eat lunch before they came; we’d use our time together to talk and catch up.  This visit was simple—much too simple when it came to Tom. For the most part, all he did was sit and listen to our conversation. Years ago, the woman and I had been part of the same homeschool group, and we eagerly discussed everything from where our children were living to the health of our mothers, now both widowed and in their 90s.  My friend’s husband contributed here and there, but mine was almost completely silent. The only time he spoke was when I encouraged his agreement about one point or another as I continued my non-stop discussion.  “You notice he’s hardly saying anything,” I mentioned to our friends when Tom stepped out of the room. They nodded. Before long, Tom was back, and we finished our visit much the same as we started it—the three of us doing most of the talking and Tom an almost-silent observer.  Only after they left did I realize what I’d done—or what I hadn’t.   In my eagerness to visit with my friends, I’d left Tom hanging in the breeze of our conversation. I’d acted as though I didn’t know how to interact with someone who is living with dementia. And worse, I’d behaved as though it didn’t matter. “That’s just the way it is,” I’d implied.   Yes, that’s just the way it is—if I’m selfish.   That’s just the way it is—if I’m not intentional.   That’s just the way it is—if I don’t listen to the Holy Spirit about how to bless my husband.  That’s just the way it is—if we don’t treat people LWD with the respect they deserve.  Only a few days later, I invited another friend over for dinner. His wife was out of the country, and I thought he might enjoy some company and home-cooked food. As I prepared the meal, I realized that—both because of his love for Tom and his own prior caregiving experience—our friend would make a great co-laborer. Together, we could give Tom a different experience than I had with our previous guests, but it would require intentionality on both our parts.  When our friend rang the doorbell, I made sure I answered. This is often what happens anyway because Tom tends to stay in his recliner, most often playing on his iPad.  Our friend and I had a quick porch chat before entering the house. I told him about the recent visit and...

(TC Perch on Pixabay) You’re so patient.”  “I don’t know how you do it.”  “You’re an example for others.”  I get that a lot. And to be honest, I shouldn’t. I understand why. In sharing snapshots of our life while living with dementia, I do my best to be as transparent as I can. But I know there are things I miss. And I also understand that my perspective is not the only one.  When I teach on writing memoir, I encourage people to tell their own story, even if it’s not the way someone else remembers it. That’s what I seek to do here. So even though my story of LWD is not the same as someone else’s, it is my story—and thus our story, the best I can tell it, for both Tom and me.  But I want to apologize for the times—past, present, and future—I may make myself sound better than I am. Because here’s the real truth: I am so not.  Not patient. Not kind. Not good. Not any kind of example for anyone.  Left to my own devices, I am just the opposite: impatient, prideful, selfish, self-centered, easily irritated, controlling, and so much more. In fact, I’m probably less likely than most people to be a good caregiver for someone who is LWD.  But here’s the thing: The truths we celebrate this Easter weekend matter. And they changed my life.  I grew up with two wonderful parents who faithfully took me to church. The sermons I heard and lessons I learned shaped my standards and values. But until my junior year in college, they reached no further than my intellect.   If you had asked me back then, I could have told you that yes, Jesus died on the cross. I would have said that yes, God raised Him from the dead.   And I would have also said that I might go to heaven someday, that I tried to do good things to gain that privilege.  You see, I grew up trying to do lots of “good things” so I would avoid getting into trouble. That’s not a bad way to start out, but it’s not a great place to stay. And it didn’t give me a great picture of the God I know today.  You see, that God created me to love and serve Him, to honor Him with my life. He knew I could never do that on my own.   Remember? Left to my own devices, I am impatient, prideful, selfish, self-centered, easily irritated, controlling, and so much more.   Until my college years, I didn’t understand that I could never be good enough for God; I needed Him to be good for...